Endometriosis and Polycystic Ovarian Syndrome: The Two Women's Diseases Doctors Miss Most

Eight years ago, when she was just 16, Ashley Nicole Ingram was in her ob-gyn's waiting room flipping through an issue of Glamour when she saw a story about polycystic ovarian syndrome (PCOS). "I realized that that might be the reason I was having such erratic periods," recalls Ingram, now a political campaign manager in Los Angeles. "I ripped it out and showed it to my doctor, but he told me it was normal for young women to be irregular. I saw a number of doctors in my teens, and they all said the same thing." But when Ingram was 18, her hair started falling out; then she gained a whopping 60 pounds. So she made an appointment with a reproductive endocrinologist, a type of doctor specializing in hormonal issues, who ran a blood test and told Ingram what she'd already known in her gut: She had PCOS. Not only that, but she was also showing signs of early diabetes, a complication of the condition. It had taken her nearly a decade to be diagnosed—and believe it or not, that makes her one of the lucky ones. Many women with PCOS suffer year after year before their illness is correctly diagnosed. The story is just as dismal for endometriosis, a painful condition that, like PCOS, affects as many as 10 percent of young women, takes seven years on average to be diagnosed and is a leading cause of infertility. "I had symptoms even as a teenager—heavy, clotty periods with diarrhea," says Kristina Grish, 34, a writer in New York City, who was diagnosed with endo three years ago. "The pain was so bad I'd curl up in a fetal position for a day, and go through super tampons in an hour. Yet every gyno I saw told me it was normal."

If a woman can diagnose her own symptoms after reading a magazine article, how on earth can doctors miss these illnesses? "As someone who sees women with both diseases every day, I find it strange and alarming that this still occurs," says Roger Lobo, M.D., professor of obstetrics and gynecology at Columbia University Medical Center in New York City. Glamour went to top experts to find out why these conditions are overlooked and what to do if you suspect you have one.

The Truth About PCOS

PCOS is, in essence, a hormonal imbalance in which excess "male" hormones like testosterone disrupt ovulation and wreak havoc on a woman's body. The first signs of PCOS, like acne and irregular periods, often show up in the teen years, when it's all too easy to attribute them to the hormonal changes all adolescents go through. Doctors may try to "treat" these symptoms with oral contraceptives, and "what happens is that women don't realize their periods are still irregular until they go off the Pill 10 or 15 years later to get pregnant, and then they can't conceive," says Rhoda H. Cobin, M.D., an endocrinologist at the Mount Sinai School of Medicine in New York City. Weight gain is another symptom, but it's such a common complaint among even healthy women that some doctors may get jaded about patients' concerns. "They assume a patient is blaming her weight gain on hormones, rather than admitting to being inactive or eating poorly," says Andrea Dunaif, M.D., chief of the division of endocrinology at Northwestern University Feinberg School of Medicine in Chicago.

Adding to the confusion? You don't have to have every symptom to have the disorder. "If a woman has irregular periods but isn't overweight, for example, a doctor may assume she doesn't have PCOS," says Dr. Lobo. Around 30 percent of women with the condition are not overweight, he says. Some of the responsibility lies with women, too. We may not tell our ob-gyns about symptoms that seem simply cosmetic, like hair loss or skin tags (molelike flaps of tissue). The lesson: Share as many details with your doctor as you can, and if you feel you're being ignored, see someone else or get a referral to a reproductive endocrinologist.

Being persistent about getting good care is key, because left undiagnosed, PCOS may cause infertility and even lead to diabetes and heart disease. The good news, though, is that PCOS is very treatable. Oral contraceptives are often used to bring levels of male hormones like testosterone down; eating healthy and exercising regularly help too, and if a patient is overweight or has early-stage diabetes, doctors may also prescribe a diabetes drug called metformin. And many women who get treatment are eventually able to conceive.

What You Should Know About Endo

With endometriosis, the tissue that lines the inside of the uterus grows on the outside, sometimes even spreading to other organs, like the ovaries, bowel or bladder. It's easy to understand why endo confounds doctors. "A woman can have a lot of symptoms like bad menstrual cramps or pain with intercourse, but nothing can be seen on an ultrasound or a physical exam," says Dr. Lobo. "The only way to definitely diagnose endometriosis is through a surgery called a laparoscopy, in which we make an incision and look inside the abdomen with a camera." Even if they suspect endo is to blame, a lot of doctors will, understandably, try noninvasive therapies first, such as painkillers or the Pill, to see if they bring relief. "I had this ache in my lower abdomen for two years before I was diagnosed," says Danielle Cottle, 18, of Sandy, Utah. "My doctor was convinced I had irritable bowel syndrome (IBS). Finally my mom, who has endometriosis, thought endo could be the cause. An ob-gyn did a laparoscopy, and sure enough, I had it. But if I hadn't had a family history, they might not have figured it out."

As with PCOS, speaking frankly to your doctor is key to getting a quick diagnosis sooner rather than later. "Many of my patients also have bowel symptoms—intense bouts of diarrhea or constipation around their periods, or pain with bowel movements and sex," says Tamer Seckin, M.D., a surgeon and endometriosis specialist at Lenox Hill Hospital in New York City. Many women are embarrassed to discuss these details, but don't be shy. Tell your doctor everything, and be specific about how bad the pain or cramping is. "If women downplay their symptoms, their physician might not realize how debilitating their pain is, and will more likely dismiss it as normal cramps," says Lynda Wolf, M.D., director of Reproductive Medicine Associates in Troy, Michigan. For most women, menstrual cramps typically disappear after two days. If yours don't, you may have endometriosis.

The first line of treatment for endo is, yet again, the Pill, which helps prevent the growth of extra uterine tissue and eases cramps and menstrual flow. But if the Pill doesn't significantly relieve your symptoms—or if you're trying to get pregnant and can't—the next step is often laparoscopic surgery, both to diagnose endo and cut away any growths. (Some doctors also prescribe breast cancer drugs called aromatase inhibitors as an off-label treatment.) A few doctors still push women to get hysterectomies or to remove their ovaries to treat endo, but that should be a last resort. Many women with endo can go on to have successful pregnancies after surgery, so if you suspect something's wrong, get help now, advises Dr. Seckin: "The sooner you get treated, the more pain-free years you'll have and the more likely it will be that you can get pregnant when you want to."